And I did
well in school – no problems. Up until age 12 when I started
having the very severe stomach pain. We went back to the
doctor, still with the same complaint. And he decided the
only way to know what was going on was to do an exploratory
surgery. And they opened me up, took my appendix out because
I was opened up, and told my mother that, yes my intestines
were inflamed but they didn’t know why. Sewed me back up and
I continued on with my life with all the pain and nothing
changed.
I was very frustrated. And now that I look back, I’m pretty angry that they didn’t you know, maybe look at a medical book to see what might cause this inflammation. It’s pretty amazing that they could look at my intestine, see that it’s inflamed and not look for a reason.
It seemed to get a bit better in my 20s and 30s and occasionally a stomach ache. And then with menopause it came back with a vengeance. And I just struggled to get through the day. I’d go home. I would get dinner and just collapse.
And I told my daughter, who worked for the autoimmune clinic at NIH that I didn’t know what was wrong, but something just wasn’t right. I said, “I’m already at NIH why don’t you write letter to the liver specialist – or to the autoimmune clinic at NIH and have them refer me over to the liver clinic. And she did. I went to the liver clinic. A young doctor from South America, Dr. Sosa, interviewed me. And this dear man listened to all of it, and then he said, “You don’t have any symptoms of liver disease. So I’m going to take the 12 vials of blood and look for rare diseases.” And a week later he called and he said, “You know those rare disease I checked for? You do have one of them. And it’s called Celiac.”
Emotionally, to learn that I had an actual disease that explained everything was such a relief. And to know that I could get better was like being given the best Christmas present ever.
I’m Sue Shouldis. And I’m living my life with Celiac Disease.
